Living through the Covid-19 pandemic with a chronic condition like endometriosis has, I have to admit, proved itself to be a truly shocking challenge for me.
I’ve become used to living my life through a strange blend of forced-isolation during the bad days, mixed with moments of reprieve as my body decides when to flare-up and when to bless me with a sense of faux-normalcy.
Finally, after living with endo for nearly a decade I can tell which signs mean “hey you’re going to be in a lot of pain, but you can probably power through your day” versus other signs that mean “this flare-up is going to be a fucking monster so get ready to stay in bed for a couple of days.”
I hate it, but at least I can now somewhat understand what is going on in my body, right?
But in this pandemic, I’ve found that my flare-ups have become pretty inexplicable. And I recently came to the conclusion that this is due to my increased, but justified, stress levels. My mind can’t fully grasp what’s going on, so to cope it’s triggering my stress levels and exaggerating my body’s inflammatory response.
In normal times, I like to be prepared and mentally organized because living with endo has given me a lack of control with my body. I feel better knowing that, if I can’t control my body, at least I can control my mental faculties.
So in hopes of bringing a little more stability to my mental health, and in return easing my internal stressor response, I decided to do some more research into what living with a pre-existing condition like endometriosis means in the era of a pandemic.
Here’s what I found:
Endometriosis is an inflammatory disease and reduces your body’s ability to fight illness effectively.
It is important to understand the difference between an autoimmune disease and an inflammatory disease, because endometriosis lives in a gray, nebulous area here.
According to Dr. Tamer Seckin, CoFounder of the Endometriosis Foundation of America, the “displaced tissue similar to the endometrium lining triggers an inflammatory response in the pelvis during the body’s attempt to eradicate the foreign tissue. This can be considered ‘autoimmune inflammation.’”
But to be fully classified as an autoimmune disease, medical professionals would have to identify antibodies (proteins in the body that recognize an invading pathogen and exterminate it) specific to endo.
Since we don’t have these antibodies present, we can’t fully classify endometriosis as an autoimmune disease, but as an inflammatory disease.
Simply put: our chronic, inflammatory state triggers an exaggerated autoimmune response.
I know this is a lot to take in, so I did some more research. I like the way this article with the SWHR and Dr. Stacey Missmer puts it:
“According to Dr. Stacey Missmer, ScD, a member of SWHR’s Endometriosis and Fibroids Network Member, scientific director at the Boston Center for Endometriosis, and professor of obstetrics, gynecology and reproductive biology at Michigan State University, ‘women with endometriosis do have an altered immune system marked by a chronic inflammatory state, and they also have been shown to be at higher risk for autoimmune diseases.’”
So there you have it: our immune systems are altered because of our chronic inflammatory state.
I am not a medical professional and will never claim to be. But I do think it’s important to acknowledge here that endometriosis does affect our immune systems, so we are more than justified in playing it safe with this pandemic raging around the world.
And for those diagnosed with thoracic endometriosis, please take additional precautions to minimize your risk. Dr. Seckin states that “Theoretically, these patients are more susceptible to any infection and may be at a higher risk of developing severe illness from COVID-19.”
If your excision surgery was postponed, don’t worry too much about your disease worsening over the next two to three months while you wait.
Dr. Karli Goldstein, an EndoFound board member and Associate Surgeon at the Seckin Endometriosis Center, confirms that endo doesn’t progress that fast, so you should be fine.
If you have an endometriotic ovarian cyst, however, it’s possible that it will grow a little bit during that time.
She does urge us to “Try ibuprofen or acetaminophen, and use heat packs” to mitigate the pain instead of opioids. Dr. Goldstein confirms that side effects from opioids can include constipation, increase the pain threshold, and cause bladder dysfunction.
It’s not recommended to go to the emergency room right now.
Instead, give your doctor a call first or utilize telemedicine options to seek treatment.
FYI: Zoom is HIPAA compliant, so you can feel safe using this program in place of an office visit.
If you are experiencing new or debilitating pain, or symptoms like fever, cough, shortness of breath, or signs of a possible bowel obstruction, then yes a trip to the ER is to be considered.
But it’s still recommended to reach out to your healthcare provider before going to the ER because that environment makes it easier to catch COVID-19.
In the words of Dr. Goldstein, avoid the ER at all costs unless “you are having trouble breathing, high sustained fevers, intractable nausea/vomiting (signs of bowel obstruction), or history of pneumothorax. Severe cases of endometriosis can have lung collapse or bowel obstruction but these are quite rare and generally you would know in advance if you have history or lung collapse with your period or deeply invasive bowel symptoms leading to obstruction.”
If you have thoracic endometriosis, safely assume that you are at more risk for developing severe complications from a Covid-19 infection.
Thoracic endo exists within the chest cavity, meaning it’s found in the lungs or on the diaphragm. It’s estimated to be found in 10% of endometriosis cases.
Covid-19 is a respiratory tract infection- so if you have pre-existing respiratory or breathing problems, or conditions like thoracic endometriosis, you could be more at risk.
Your best defense is to minimize social contact, regular hand-washing, and self-isolating.
Get in touch with your doctor to discuss your needs with more in-depth medical details.